I’ll take a few posts here to discuss some of Thomas’ particular struggles. I’m sure that you’ve heard autism referred to as a “spectrum”, meaning that there is a wide range of impacted-ness (is that a word?) across the population of people diagnosed with autism.
When you meet Thomas, one of the first things you will notice is his use of language. Echolalia (a.k.a. Scripting) is big in our lives.
1. echolalia n. Psychiatry . The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism or some types.
He repeats words & phrases. A LOT. Our current scripts are “Be careful”, and “What do you want me to do?” Sometimes it isn’t even words, but instead is more of a musical intonation of a phrase with some approximations of words. This is where echolalia can actually be fun because he absolutely loves it when we figure it out what he’s trying to say. One of my favorites: “This is NPR news. I’m Robert Siegel. And I’m Melissa Block.” The echolalic phrase changes every few weeks or so. This helps mommy & daddy from completely losing their minds. Just kidding. Kind of.
The current “What do you want me to do” has really gotten some of the professionals he works with very excited. They’ll say “He asked me what I wanted him to do! It was SO appropriate!” And I have to smile at them and say yes, it may seem like it was, and it may have been! But it is also one of his scripts right now, so, you know…maybe not. Truth is, we just don’t know – it may be some combination.
Sometimes it is hard to know if it is purposeful speech or not. A few weeks ago, the script was “…in the sky…”. I took him to the Maundy Thursday service at church, and he quietly said “In the sky” over and over. I asked him if he thought Jesus was in the sky, and he said yes. A sweet moment.
But then, of course the Maundy Thursday service has to end silently, and of course Thomas is still saying “in the sky” over and over, and so I try the techniques of showing him his “quiet card” which prompts him to have a quiet mouth for about two minutes. It was a little longer than two minutes he had to be quiet, and trying to keep him quiet after that only frustrated him. It got a little noisy. After the service, a fellow autism mommy (who had her son with her) put her arm around me, laughed and said “God bless us autism mommies for bringing our boys to church and doing our best!” Having a supportive and understanding community around you is truly priceless.